Purple Canaries

Joyce Gould with Jill Gould

Acute Porphyria

NPAW (National Porphyria Awareness Week) Caregiver Commentary, Friday, April 12, 2019

Latent; clinically latent; completely latent; asymptomatic; completely asymptomatic; totally asymptomatic; clinically expressed; overt; manifest; biochemical and clinically manifest. Over the years, many terms such as these have been used by doctors/scientists to describe patients’ acute porphyria activity (most notably AIP which has long been the scientific “darling” of the acute porphyrias). In 1994, based on […]

NPAW (National Porphyria Awareness Week) Caregiver OpinionThursday, April 11, 2019

    If anyone has doubt about APF’s agenda to keep acute porphyria rare, here’s something from an 2018 Alnylam Pharmaceutical Earnings Call Transcript* in which an Alnylam executive assured a querying investor, “let me emphasize that porphyria will remain an ultra-rare disease…we’ve been working with the porphyria network to strengthen the next set of physicians….” Yup, […]

NPAW (National Porphyria Awareness Week), Tuesday, April 9, 2019

This NPAW, thought I’d share bits of history uncovered as I review, sort and file zillions (ok, not zillions, but a lot) of porphyria-related articles. Orange–hued urine…acute porphyria attacks associated with severe heme depletion in the liver…. U.S. Dr. Cecil J. Watson (1901-1983)’s medical fellowship was completed in the Munich laboratory of the world’s leading […]

Monday, National Porphyria Awareness Week April 8, 2019

Acute porphyria is… “horrible.” “excruciating, mind-bending pain, and more pain, vomiting, heart racing like crazy, not being able to breathe, brutal—just brutal.” “being treated like or talked to like you’re a hypochondriac, a junkie or mentally ill.” “doctors acting like I’m crazy.” “being told over and over that ‘everything’ is normal—but I know it isn’t.” […]

Saturday, National Porphyria Awareness Week, 2019

 APRIL 6 – 13, 2019 NATIONAL PORPHYRIA AWARENESS WEEK Finally! An organization that understands… The New York State Rare Disease Alliance: A Place for Patients and Caregivers Who are the True Experts in Rare and Complex Disease Care This is why Closed Facebook Forums dedicated to Porphyria were established long ago and have continued to flourish […]

Porphyria Awareness Week – Tuesday, April 24, 2018

Well, well, well. Seems something has gotten under the skin of some porph ivory tower dwellers and hangers-on. Mama Canary doesn’t kowtow to manipulative gaslighting—and knows what she reads. Methinks this individual and her followers need to review what “she” herself wrote in her 2014 memoir —and what she wrote nine years later. To clear […]

REAL HEROES: THOSE WHO SUFFER WITH UNRECOGNIZED ACUTE PORPHYRIA

If anyone wants to learn about real heroes, all one has to do is tune into closed FB porphyria forums. Tossed aside because they haven’t achieved a “real” diagnosis (as Desiree Lyon Howe articulated during the March 1, 2017 FDA/APF meeting—evidentially to her, “real”  means confirmed by APF “experts”), these remarkably brave patients cope with […]

A telling story for all patients with atypical acute porphyria presentation.

If the illness doesn’t kill you, the medical bills just might. Look elsewhere for answers. For an eye- and mind-opening information (and review of a documented case history) , check out 2018 STILL FEAR-RIDDEN, FRUSTRATED, FORGOTTEN AND FED-UP: Patients with Atypical Acute Porphyria Presentation STILL Stuck in Urinary Diagnostic Quagmire